This may not interest anyone but it is emotionally healing for me to write about my pain and my life right now as I work toward better health and less pain.

Friday, September 22, 2006

Another week comes to a close and another week that has been filled with pain and disappointment. I try to stay positive but after a week like this last one it can become pretty hard. I had a pump refill today and when they check me in to the hospital they always have to take a complete history of medications and any changes and what abilities I have/don't have. I think the last three times when it came to what I can do around the house I am reduced to tears. I want so badly to pull my own weight but it's just too painful to do the work of a "normal" person.

I asked the doctor today if my dosage is high/middle or low. I just had no idea where I was at. He said it is not low and not real high but it is a good dose and probably an average one. He said that sometimes it can help a patient to switch medications for a while and then go back to the morphine. We decided that next refill they will use dilaudid in the pump in place of morphine. I think it is a good idea. I have been taking morphine orally and now intrathecally for several years. Maybe with a little break from it the dose will be more effective when we change back.

I think I will go in reverse this time and start with the pump refill. I am still seeing Dr. Beatty and my doctor, Dr. Grove, is still serving his time in the service stationed in Germany. We asked if Dr. Beatty hears much from my doctor and he told us that he had just called to tell them he completed a 55k. walk. It has become a big thing in Germany to do these long walks instead of the running. I think he said 55k is around 30 miles. Dr. Grove doesn't have a car over there and had to walk a mile to the "walk" and a mile home but he completed his course and got his mug and was proud of his mug. He has seen lots of castles and has really enjoyed the scenery. He really wants his wife to join him for a week or so and show her around the country. Is it the "Rhine"??? River that goes through Germany? If that's the name he is living somewhere close to that river. I asked if the work was difficult and he said every time he's talked to Dr. Grove he's never brought up the work.

I saw the rheumatologist on Thursday and she is testing me for rheumatoid arthritis. She said if it isn't rheumatoid it is probably osteoarthritis that is afflicting my joints. I had some blood work done and xrays of my hands and knees.

I told the pain clinic of all the extra pain I've had with the pain in my joints and told them I didn't think the morphine I take orally is doing anyting for me. I said I would really rather have the vicodin for bad days. I also told them that I wanted a bolus in the morning. A bolus is a little extra medicine at a certain time of day. They gave me a 1 mg. bolus when they refilled the pump and then programmed the pump for a bolus every morning.

I had the vicodin filled on the way home so I could take two and maybe it would help me. Between the bolus and the vicodin I have pretty much been out of it the rest of the day. I tried to watch TV with Wayne and kept falling asleep no matter how hard I tried to stay awake. I just hope that they programmed the pump right...they had to call the company to figure out how to do a complex program...that's what it's called...not that it's that difficult to do. If I continue to be this sleepy I think I will have to call the doctor's office and see what's going on. I have taken this much vicodin before and it hasn't made me sleepy at all.

The good news is that the pain is gone...bad news I can't stay awake to enjoy it:)

When Tyler was here last time he was in rare form. He said the funniest things and I wrote some of them down because I knew I'd never remember them. He was playing a computer game (or as he calls it a puter game) and when he'd have trouble with the game...like his guy getting killed he would say "that's a cow full of bacon" and another one was "I'll be sitting on an old cabin log" and the 3rd one I remember (or wrote down) is "who let the pirana's out"? I think he knew he was funny because he kept laughing when he said them....of course I laughed too and it kept the comments coming!!

Rhebeca...if you read this I am so sorry I couldn't make it to your soccer game today. I was really hoping I could make it but after my doctor's appointment I was just too out of it and tired that i couldn't see how I could make it. I never want to disappoint any of our grandchildren like this but that is the reality of not being well. There are just days where the pain is too great or I'm too out of it to either have them come over here or go to their activity. Believe me, I'm there in my heart and throughts:)

I am still in the card making business. I might be in competition with hallmark before long:) I have closed with 4 of the cards I've made this week. I'm itching to scrapbook again but while I have all the card stuff out I will probably continue making those until the supplies dwindle down.